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A Year Later

A year ago today, I cut off my healthy breasts to reduce my astronomical chances of developing breast cancer. The months leading up to the operation were brutal, to say the least. It was the hardest thing I’ve ever done, but I’m really glad I did it.

I have the BRCA 1 genetic mutation, which carries with it a 40-85% lifetime chance of developing breast cancer. While breast cancer in the general population generally strikes after menopause, for BRCA 1 women, the age of diagnosis can be much younger. Many women in my family developed breast cancer in their 30s, but my mother holds the record for youngest diagnosis — she learned she had cancer just a few weeks before her 31st birthday.

I didn’t want to cut off my breasts, but it’s what I had to do to feel safe. While it’s amazing that science could pinpoint my risk of cancer, it didn’t leave me many options. My choices were to expose myself to an emotionally draining barrage of tests a couple times a year, tests that began coming back with assurances like, “that thing we found on your scan is probably not cancer,” tests that don’t prevent cancer, simply catch it early. After watching my mother struggle with cancer, I decided I couldn’t play chicken with my life like that. I could have taken estrogen blockers that would have reduced my risk as long as I took them. Of course, taking estrogen blockers means undergoing temporary menopause, and as a BRCA 1 carrier my lifetime risk of ovarian cancer is 40-60%, with most doctors recommending an oopherectomy after child-bearing is done. So I already was and still am facing early, surgical menopause. My final option was to take the breasts off entirely, permanently reducing my risk to less than 5 %. I chose certainty.

My new breasts are cosmetically appealing, or so I have been told by doctors and bra saleswomen, but I still miss my old ones. Because taking out the breast tissue cuts through nerves, I’ve lost a lot of skin sensation. This winter I noticed that my breasts can’t get cold, for example, because there is no feeling. Sometimes it’s awkward to slither past a stranger in a crowded room, only to realize later that my senseless boobs must have bumped against him or her. From time to time I get an itch I can’t scratch because there are no sensation receptors left in my skin. This permanent numbness, reminiscent of a dentist’s shot of Novocaine into an inappropriate body part is the worst thing about the surgery.

Without my breasts, my real breasts, I mean, I felt strangely incomplete, deformed, ugly. As if I were faking an identity I no longer had claim to. In response, I became excessively girly. Jeans left my wardrobe, to be replaced with a strict diet of leggings and dresses, preferably in funereal black. I never let anyone see me without makeup or in sweatpants. I felt dishonest about my new body, as if my personal appearance, my faked cleavage, was presenting a lie to the world that belied who I really was. I was pretending to be a normal, natural female, when in fact, I consisted of medical-grade silicone held into place by a donated collagen matrix (read: skin harvested from the backs of corpses and stripped of DNA).

While I was glad the surgery was over, the months that followed were dark, bleak ones for me as I wrestled with these emotions, emotions that I even felt a little guilty for having — I mean after all, it’s not like I had cancer or anything.

Still, the best thing about the surgery is that the threat of breast cancer no longer hangs over my head. It’s hard to overstate that, since I have no conscious memory of being without that worry. After all, my mom first developed cancer when I was 18 months old. In some ways, I share the fate of my mother and grandmother (and aunts, great-aunts, first cousins once removed) — I’m going to my grave without my real boobs — but I do feel I’ve dodged the bullet. I don’t have to have chemo. I won’t lose my hair. I won’t have to spend years living with the shattering uncertainty that the cancer might recur. And I’m so glad I don’t have to.

i stumbled on your article in the Daily Beast from 2010 when I googled BRCA2 and voluntary mastectomy.

I’m 34, and last year I found out I tested positive for a BRCA2 gene mutation. The first thing doctors and my genetic counselor told me was: take out those ovaries, don’t wait. I have 2 kids, my days of having children, as far as I have been concerned, are over. I’m good. I’ve done the diaper routine, and I had two very risky pregnancies – so….i’m all stored up on mommy-ness.

The problem I have been facing was not tossing and turning over losing the ovaries. Frankly, I’ve never had an emotional attachment to any of my organs….except perhaps the old noggin. But the real challenge has been facing the fact that no doctor will give me estrogen replacement because that will further perpetuate the breast cancer risk – so hello pre-menopause at 34. I haven’t been married long, I want to have a “normal” life….just didn’t sound so appetizing to lose the one source of womanhood that the body naturally needs. Doctors keep using terms like “quality of life” when they tell me that there are ways to help me combat the symptoms of menopause. Sounds god-awful – like i’m half dead already.

I was informed recently that maybe i could kill off my anxiety about quality of life and also reduce the exposure to risk. Voluntary mastectomy. If i take out everything, and do reconstruction, I will also be allowed to take estrogen supplements because, lo and behold, there are no breasts left to torture with estrogen stimulation.

It’s a huge decision – one I’m not taking lightly, and has stressed me out for the better part of the past year. I came across your article and….breathed a sigh of relief. What you wrote are the same words that have been swimming in my head for months – I too have felt like I wish the mutation had been sort of X-men-like super hero mutation – i’d much rather be moving spoons and forks with my mind than contemplating cutting off my breasts. But it’s like I’m the court jester in the kingdom of genetic f**k-ups, and I just have to keep juggling all the pros and cons, risks, costs, and family considerations.

I wondered if you could shed more light on the technicalities of your surgery – did they remove lymph nodes? what kind of complications might have occurred post-surgery (my mother was diagnosed last year, had a mastectomy, and then suffered from lymphodemia afterwards). I don’t mean to pry, but I am trying to psych myself up for all the information that will soon come at me now that I have pretty much made up my mind that I will remove the ovaries and the breasts. Any information you could share would be greatly appreciated. Perhaps others have reached out to you…..

Right now I live in Chile, though my home is in Illinois…I have 2 small boys – 2 and 4 – and I think about how a decision to wait could affect them in the future. The doctors are very good here, only the best right? But more than anything, I feel that my window is now…and I just need more confidence.

Great writing. Great articles. Thank you for sharing what you have so far through your blog etc.

First thing’s first. If you haven’t already been to FORCE (http://www.facingourrisk.org/), a nonprofit serving BRCA women, you should go and check out their bulletin boards, which can connect you with many other women undergoing this whole mess. They’ve also got good information about BRCA, and a large network — Sue, the woman who runs it, is great about hooking people up with each other and specialists near them.

As far as mastectomy goes, I haven’t had any complications so far. The surgeons don’t remove lymph nodes with precautionary mastectomy; the reason to remove lymph nodes is because they’ve tested positive for cancer, or at least, this is my understanding. So I’m not struggling with lymphodema or anything.

For me, the main side effect has been a stiff upper back — I’ve always had a tense back, but now it gets really stiff if I don’t go to the gym and lift weights. Extra incentive.

I had immediate reconstruction in the same procedure as my mastectomy. The most common complication with implants, like I have, is capsular contracture, when the scar tissue around the implant shrinks and can be painful and make the implant hard. I’m three years out and no complications yet, but the rate of complications increases the longer patients are out of surgery.

The biggest tip I have for you: Go to someone who SPECIALIZES in BRCA patients. They are out there. I found that those doctors and their assistants and receptionists and nurses treated me way better than hospitals where I was an anomaly. It sounds like a small thing, but it’s not: when you call to schedule your mastectomy, if the nurse treats you like you’re crazy, you feel extra-awful.

There are lots of different procedures out there, and doctors seem fond of recommending the one they’re most expert in. So if you want reconstruction especially, think about the procedure you’d like most and then figure out if you’re a candidate for it.

Hope this helps, and hang in there — it’s awful, but you’ll get through it.

Check out this 4 minute reel about Ginger Sheehy’s journey as she decided to have a double mastectomy due to the BRAC gene. I love that more women are now talking about this openly and supporting each other! FANTASTIC!